A determined little girl…
It’s been a great week! Rory continues to make positive progress. Her breathing continues to improve …she was moved to 2 on the nasal cannula which meant...she met criteria to move to intermediate care! So….over the weekend she transferred from the NICU to intermediate!! She now has her own room and we no longer have the challenge of coordinating our visits with neighboring parents. We still can only visit for 4 hours within specific time slots, but any time slot is always available which is so nice logistically for coordinating our visits with making sure Jedidiah is taken care of. We feel like we (she) graduated in so many ways :) Back to school and moving on up to the next grade.
Then the big update, Rory drank milk from a bottle!! Only a little bit…and has a lot of practice and learning to go…but still a big deal. One doctor initially told us, because of her MRI results it may not be very likely Rory would have what it takes to coordinate sucking, swallowing and breathing all at once to take a bottle, but that they’d give her a shot at it. Little miss continues to do more than what is expected of her and we are grateful and praise God. She’s still is doing a hybrid of tube feedings and bottle feeds and probably will for a little while (the nurse compared it to running a marathon…taking a bottle after eating out of a tube for a month is exhausting for newbie NICU babes, so it will take time and practice). They said Rory is determined and seems to really like the bottle (her first time to taste food...I would imagine its better than just getting a full stomach with no taste). I will say though she sure does hate burping after drinking from a bottle…(she cried LOUD the whole time..haha)…but what baby doesn’t!? New experiences…fun and not so fun for little girl. Lots to practice and learn..but so grateful for the progress.
We are SO proud of her, and so grateful for God hearing our request and our prayer. We will continue to pray every step of the way for every milestone that we know will be a hurdle for her. Knowing she may not hit them all, but not doubting what God and Rory can do. We must believe in our children and what they are capable of, as well as not doubting God, even when it feels so dark… (preaching to the choir here as doubt and fear so easily comes…I must constantly be reminded to not fear and not worry!) … he can make anything possible. And he has a plan regardless of the outcome…not that he causes the bad dark things, but he can redeem them, and he does want good for us!
This whole experience has made me realize how much more I need to pray. Need it like the air I breathe, (honestly at moments when I feel I can’t breathe because I feel overwhelmed by where we are - prayer always seems to help). And we must pray, not just for Rory because her needs are so great and hit us so stark in the face, but also for Jedidiah, for request for his future and for so so many praises for all the good things he has and is capable of! Nothing is promised and guaranteed, every function is a gift!
I’ve noticed I call out to God in prayer with my request so much more than I do my praise and my thankfulness. Trying to remember to call out in gratitude and celebration of the answered prayers and the little things we take for granted as much as I do the request! .
And when we are angry - God can take that too, he can handle our anger and our sadness….but often times its the prayers of gratefulness that help us the most…our prayers for gratitude give us the strength we need to keep moving and the joy we so desperately seek.
With Rory now drinking from a bottle this song has been on my mind a lot and I sing it to her while snuggle. So proud of her “feasting” and grateful for a promised day of feasting together with all restored and no more tears!
we will feast song by Sandra McCracken
“We will feast in the house of Zion
We will sing with our hearts restored
He has done great things, we will say together
We will feast and weep no more“